Topic: IVIG users....Severe headache 2-3 days post?
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I finished up my first five days of IVIG 3 days ago. I have had increasingly severe headaches, neck pain, and back pain. I was wondering if anyone else has experienced this.
I have a call into my LLD but no call back so far. The pain is very bad, I have had to resort to pain pills and with minimal relief.
I have no fever, otherwise I would think I was having the meningitis side effect. My head hurts if I move it at all, my entire spinal column hurts, my neck hurts, back hurts. If I lay perfectly still it is better, but if I get up and move it is horrible. If I walk, with each step it is like all the pain is being shaken up.
It has gotten worse each day but right now seems to have leveled off. I just didn't know if this was normal. Wondering what others have experienced. If the pain gets to where I can't control it with the pain meds I have at home I realize I'll have to go to the ER, meaning if it gets any worse at all, or if I develop a fever.
I thought the pain was supposed to hit for a couple days then subside, not worsen. I know lots of you have had IVIG so I was wondering what your experiences were.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I believe this is common. But if it is very severe, don't hesitate to go to ER.
One year ago when I started IVIG I had 5 days in a row like you. For about 1 month afterwords I had headaches that I thought would never go away and I was taking advil a few times per week. After about a month it all got better and since that time I have never experienced headaches at all from the IVIG (I am still on IVIG). During that month though I had times when the headaches were real bad one day and then the next day not as bad...then slowly it all got better.
It's probably a good idea to talk to your doctor but try to hang in there as best you can. I didn't have the neck and back pain but based on what I went through I would bet that everything you are experiencing will start to feel much better over the next few weeks.
-David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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My husband receives his IVIG spread over two days once a month. With his first infusion, he had flu like symptoms with fever and headache and he did actually land in the hospital but this was due to a low red blood cell count. We blame part of this reaction on the fact that he started IV Rocephin just a week before the IVIG, a combination that created a major herx.
A month later, he did IVIG again and he had flu like symptoms but not to the same level as the first time and he definitely did not require hospitalization. Each successive treatment got easier to the point now where he might get just a minor headache and feel a little tired but that's all.
Take whatever pain med you need to make you feel better. I think they recommend Tylenol (phooey!), the advil works much better.
Posts: 984 | From San Diego | Registered: Nov 2006
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Tracy9
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Member # 7521
posted
I am unable to do anything but lay perfectly still in bed. I have been taking 800 mg of Motrin, and 2 Vicodin 5/500 which is more pain meds than I've ever taken before, and it still does not take away the pain.
It hurts horribly if I walk, with each step it feels like pressure, like my head and spine are going to burst, cough, or anything like that.
I cannot get rid of the pain no matter what, though it gets better with the meds, especially the Motrin. I was heading out the door to ER when I decided to just try and go to sleep.....and see if it is any better tomorrow. If not, or if it gets worse during the night I will go.
I know it is all normal, side effects from the IVIG and certainly related to the very strong dosing I had for five days, and the fast rate of infusion. I guess I am just hoping I don't develop the meningitis side effect, or get to the point where I just cannot control or stand the pain and need pain management.
I did reach my doctor, he did not say I had to go to ER but wants my nurse to call him tomorrow. I also spoke with my nurse who advised if it got any worse to go to ER, so I will do that.
I was just wondering if others had experienced post IVIG pain this severe. Also it just increases each day, and now I am 3 days post IVIG.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I hate to attribute everything to a herx, because I think that can be dangerous...but....
I'm wondering if this could be a herx.
I had a herx similar to this from Quinine/Clindamycin. And what's weird, is that ibuprofen helped a lot. Which was shocking to me, considering it was the worst headache I had ever had, with the exception of maybe right after my childhood tick bite.
So the fact that you say Motrin helps it, makes me think of what I went through, which I think was a herx. It lasted about 4 days I'd say, but only 2 of the days were really bad. So hopefully this will improve. Hang in there!
Posts: 4590 | From Midwest | Registered: Jun 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I don't have anything that would cause a herx. IVIG doesn't kill anything off,so it doesn't cause a herx, and what I am experiencing are the standard IVIG side effects, just to an extreme extent, bordering on meningitis, an extreme side effect of IVIG that can require hosptialization.
The fact that Ibuprophen helps is probably because of the inflammation all around my brain and spine. I am so miserable....4 days now...going to try and call doc again.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Isn't Motrin the same as the Ibuprofin in the Vicodin?? If so, you took too much (I think)! Maybe I'm wrong. But it's at least in the same class. So watch out for stomach/intestinal bleeding. Ask
your dr about it. And take them with plenty of food or yogurt or whatever. It's also helpful to take them with vit. C, NAC, and vit E to counteract toxicity.
I thought that IVIG can create a herx of sorts from ramping up your immune system. I'm not sure, but I thought so.
Posts: 3771 | From around | Registered: Mar 2008
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lymetwister
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Member # 19590
posted
Tracy,
You know my story. I felt like I was in a constant Herx during and for many months after my IVIG. I would never touch that stuff again.
If you go to the ER be prepared they will most likely to an LP to check for meningitis.
Besides the headaches, everything else you describe does sound like a Herx to me.
I read so much on IVIG. The literature is conflicting as some say it calms the immune system, while others say it boosts the immune system in order to fight off infection.
In either case, no one really seems to know exactly how it works.
I wish you the best.
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I realize that the antibodies you are being infused with are not antibodies specific to Lyme, but I'd have to think it's possible these general antibodies could up-regulate the immune system, thus you are now fighting infection better?
I would think that could cause a herx if your Lyme load is high.
I could be completely wrong though...I'm not a doctor.
About what Lymetwister said....it's actually not even "conflicting"....it is possible for something to calm the immune system, and boost it at the same time. Right? Because the immune system has many components. I would think, based on what I've read, you could calm the aspects that are "autoimmune," (inflammation) while at the same time, boosting other elements.
Again, I could be wrong, but this is my understanding of the immune system. It is the same principal behind Low Dose Naltrexone.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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